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The cost of pride

The Bruneian culture is rich in compassion and grounded in moral values, often expressed through various sayings and phrases passed down through generations.

Who among us hasn’t been reminded to “jangan camah mata“, a phrase urging us not to merely observe without taking action? Unfortunately, this valuable teaching is not always reflected in every aspect of life.

Another common saying is “biar putih tulang, jangan putih mata”, that roughly translates to “death before dishonour” which symbolises the deep sense of pride and honour ingrained in our culture.

While pride can be a source of strength, it can also become a double-edged sword, as it often discourages vulnerability or the admission of struggles.

Both of these sayings may seem harmless on their own, but when applied to the care and treatment of persons with different abilities (OKU), they reveal complexities.

Parents of OKU children are often caught in a delicate balance – many feel the need to shelter their children, fearing how society might treat them. But pride also plays a role.

Some families, driven by the need to “save face” or maintain appearances, may not seek the support their children need, fearing judgment or misunderstanding.

This extends to the broader public, where, due to a misplaced sense of pride, many fail to heed the wisdom of “jangan camah mata”.

PHOTO: ENVATO
PHOTO: ENVATO
PHOTO: ENVATO

We may witness moments where intervention or understanding could make a difference, yet we hesitate, bound by societal expectations.

While our cultural heritage has many positive values, we must also recognise when those values hinder us from extending compassion and support where it’s most needed.

Hajah Marinah binti Haji Abdul Hadi, mother to a child with Down syndrome, shared with a heavy heart the emotional turmoil she went through when she first learned of her daughter’s diagnosis in 2001.

At the time, she had little knowledge or prior interaction with individuals with Down syndrome, making the news even more overwhelming. The experience was filled with a mix of emotions – guilt, shame and fear of the unknown.

“When the doctor announced Farhanah’s diagnosis, he immediately began listing all the things she would supposedly never be able to do,” Hajah Marinah recalled. “It felt as though he was saying she wouldn’t be capable of any independence.”

This reaction is, sadly, not uncommon.

Vanessa, an occupational therapist who runs a clinic for children with special needs, has observed that the Sultanate still has much progress to make in raising awareness and fostering empathy for OKU.

She noted that the lack of understanding often leads to prejudgments, which in turn hinders these individuals from being given fair opportunities within the community.

Vanessa has a part-time worker who has cerebral palsy, someone who she shares history with as their prior OT, and is privy to the ups and downs of individuals like him, just trying to live within society.

“And I’m not just talking about differently-abled individuals – this challenge affects everyone in different ways,” she said.

She added that if society could be less tunnel-visioned and more open-minded, it would make a significant difference.

“Acceptance can show up in many forms because people have such varied personalities and behaviours, and while we’ve made progress, there’s still a long way to go.

“If we, as a society, could be a bit more accepting, less judgmental and put ourselves in somebody else’s shoes, we might be able to improve policies and ensure they are followed through. That is where we need to focus.”

Accessibility, continued Vanessa, is still a critical issue, yet is often overlooked because “for many of us, it doesn’t directly impact our daily lives”.

“Unless you work in the health industry or have a personal connection, it can be difficult to grasp the everyday challenges faced by people with different abilities.

Many people form their own perceptions without truly understanding the nuances of these challenges.”

Citing physical accessibility for people in wheelchairs, Vanessa said, “While many of us walk effortlessly, imagine if that simple ability was taken away. How difficult would it be to navigate daily life if you couldn’t freely access buildings?”

She noted that seemingly small obstacles can become significant barriers for others. While many places may claim to offer accessible facilities, true accessibility is often neither fully considered nor properly implemented.

She urged the public to reflect on the fact that, beyond designated parking spaces and ramps, there are other crucial aspects to consider, such as access to restrooms or ease of navigation inside buildings.

“For people with different needs, these barriers require meticulous pre-planning. Their families, too, must prepare for even the simplest tasks – things many of us rarely give a second thought to,” she added.

It’s important to remember that accessibility should not be a luxury. It’s a basic human right, and improving public infrastructure to accommodate everyone benefits society as a whole.

The conversation about accessibility is long overdue, and it’s time to ensure that everyone can move through the world with dignity and ease. – Wardi Wasil

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